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PF.41 ‘To Have a Little Bit of Hope is Like Being Thrown a Lifeline’ The Experience of Pregnant Women with a Diagnosis of Fetal Lower Urinary Tract Obstruction (LUTO)
  1. EQ-J Quinlan-Jones1,3,
  2. ED Denny2,
  3. MK Kilby1,3
  1. 1University of Birmingham, Birmingham, UK
  2. 2Birmingham City University, Birmingham, UK
  3. 3Fetal Medicine Department, Birmingham Women’s Hospital NHS Foundation Trust, Birmingham, UK

Abstract

Introduction The PLUTO: Percutaneous Shunting for Lower Urinary Tract Obstruction (LUTO) Study was a multi-centre, randomised, controlled trial (RCT) undertaken to evaluate the safety and efficacy of fetal vesicoamniotic bladder shunting in moderate to severe ante-natally diagnosed cases compared to conservative management. Within the trial a qualitative study explored women’s motivation for entering the trial, and their experience of the condition and its management. The trial was terminated early, but the qualitative data collected provided an insight into being pregnant with a fetus with a serious medical condition.

Aim To gain insight into the experiences and perceptions of pregnant women asked to participate in an interventional fetal medicine trial requiring an invasive procedure.

Method Semi-structured interviews were undertaken with a purposive sample of women involved in the PLUTO trial (n = 6). The data were analysed thematically.

Findings Motivation for participation in the PLUTO trial was consistent with other research, and involved reasons of both altruism and self-interest. Loss of a normal pregnancy was precipitated by the current routine use of ante-natal scanning. This was associated with uncertainty for women and a decision making process that could only result in a less than ideal option.

Conclusion Undertaking a qualitative study within the PLUTO trial has illuminated the experience of receiving a prenatal diagnosis of LUTO following ultrasound scanning. The unexpected nature of the diagnosis itself and the evident uncertainty that permeates this condition and its management during pregnancy appears to exert some influence over women’s decision making.

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